I’ve had asthma since I was 11 months old, which means that asthma is something I’ve lived with my entire life. They used to promise that I’d grow out of it, but I never did. Now they tell sufferers that you manage it. For me it’s really not a “big deal” in the sense that I don’t know of any other lifestyle. Along with asthma comes seasonal allergies and food allergies, all of which are manageable, preventable and controllable with proper medication and care.
Growing up, I spent quite a bit of time in and out of hospitals – those were the day of oxygen tents – but I wasn’t a “sickly” child. Asthma can sometimes manifest as an invisible disease in that when there are no visible symptoms and certain patients often look like the very picture of health. That is, of course, until they don’t. Since breathing is literally a matter of life or death, and since troubled breathing can quickly escalate if not properly monitored and treated, patients are given the red-carpet treatment as soon as they enter the doors of emergency. Or at least that’s how it used to be.
My single mother, a nurse, was not an alarmist. In hindsight, I got the impression that she underplayed the severity of my symptoms so oftentimes I was usually much more sick or more acutely in asthma distress that I realized or let on.
The scenario would play out like this: I’d wake up feeling unwell but because my mother had to work, my two sisters and I would go to school. I’d be unwell at school and sometimes the school would call my mother, which meant that she would have to leave work, take me home and then rush back to work. Or she would take me to the hospital as the case may be. Which meant that my two sisters would have to fend for themselves until such time as my mother returned home since I’d usually have to be admitted.
Eventually there came a time when I started to feel that my illness was a burden to my single mother. I’d tell her that I was “fine” and that a hospital visit was unnecessary. While I was at home, my symptoms would escalate and because she had already left work once that day, I’d prolong the moment when I’d have to call her since it would mean her having to attend to me again.
Between the phone call and my mother’s subsequent arrival at home, I’d literally run up and down the two flights of stairs in our home to ensure that I was “really” sick in order to “prove” that I did in fact require hospital treatment. When my mother and I would arrive at the doors of emergency, the nurses would plop me in a wheelchair, quickly administer oxygen and immediately start an intravenous cocktail of life-saving, symptom-reducing asthma medications.
After my mother had given the triage nurse my information, she would join me in the emergency ward, and the nurses would admonish her for “waiting too long” to bring me to hospital. This of course was unfair, because little did anyone know that I had played a strategic role in exacerbating my own symptoms by running up and down the stairs!
It is likely that because my mother was a nurse, she was also instrumental in helping me to “normalize” my asthma by encouraging me to manage my symptoms and take personal responsibility for my own treatment and self-care. This meant that I did well in school, excelled at sports, and made school teams. If I got sick it wasn’t the end of the world, it just meant that I had to do a better job of managing my symptoms. And truthfully-speaking, to this day asthma-management is something I continue to struggle with.
After stints in the hospital – visits usually lasted anywhere from three to seven days, depending on how much damage I had done – I’d come home and clean the house. I’d bake and I’d organize as if I’d never been gone, but of course readjusting to home life was awkward.
As an adult, I’d later learn that I my behavior was in keeping with the behavior of children with chronic illness. It was very much the case that in order to appear “normal,” children with chronic illness often become people-pleasers and downplay their illness. They often over-compensate in order to be like everyone else. Of course, this is something that I internalized since no one ever told me or implied that I was “abnormal.” For me being agreeable just seemed like the most natural way to resume my place in the family.
I’m raising my daughters much in the same way. I’m doing my best to “normalize” their lives with asthma while encouraging them to express their exact feelings without feeling like they have to “do” or “be” anything other than what they are. I let them know that they are loved and cared for and that asthma and allergies are a part of their lives and it’s totally okay. I’ve told them that there’s no shame in having a chronic illness nor is there anything to be afraid of. I’ve also spoken to them about proper asthma management and why it’s important. They know, for example, that momma was a “lousy patient” as a kid. We also share the odd story about how annoying it is to have to take meds, but reaffirm that the end result is health and wellness.
On the few occasions that my girls and I have had emergency treatment and/or overnight stays in the hospital – my 6-year-old more often than my 3-year-old — I’ve done my best to ensure that each experience is always as upbeat and positive as possible. We take a special bag of books, toys and favorite items to take the edge off the emergency observation period that usually lasts more than four hours. I make it a point to establish a good rapport with the emergency nurses and doctors in charge of my daughters’ emergency care by being as informed as possible about their overall condition and subsequent treatment. In this regard, I’m often asked if I’m a medical professional. My daughters, too, have been complimented on their willingness and preparedness to receive treatment, which is atypical for any child experiencing an asthma attack.
In many ways, my daughters are fortunate to have a mom who lives with asthma. I have first-hand knowledge of what this illness entails and I’m aware of how emotionally taxing a chronic illness can be for family members. Together we’re developing coping strategies which involves showing them the ways in which they are empowered. At the very least they will not willingly endanger their respiratory health by behaving recklessly and rebelliously in the future.
(Photo: Spike Mafford)